Time Stood Still

Last week we were battling Whitney's constipation. She is predisposed to this as we are still unsure as to her control over her bladder and bowels and were prescribed a laxative. (Her skin is doing much better, by the way.) Sunday afternoon Matt and Fiona left for up north. Matt had to work up there this week and we thought Fiona would enjoy a few days with her grandparents. Little did we know Whitney would begin vomiting on Sunday night. She became fussy and lethargic as well. These are 3 of the signs for shunt failure so Whitney and I headed to the ER. Thankfully Fiona was all set and in great hands. That is the beginning of God's providence shown to us.

We were registering at the front desk of the ER and Whitney promptly vomited again, which was perfect timing. We were able to bypass the waiting room and triage and head right in. We began many tests. The stress level was pretty high at this point as we were not sure what we were dealing with. This is also when Whitney's bowels decided to move. I will spare you the details and just tell you that the smell was bad enough for them to shut the door because people passing our room were asking what that smell was. I also had to apologize to each doctor and nurse who came in. Through this I was distracted with trying to keep the cast clean, Whitney content, and Matt updated via text message.

I was notified that Whitney had a urinary tract infection and they were going to consult the neurosurgeon as well. They admitted us around 2 a.m. Monday morning, after 6 hours in the ER. Needless to say Whitney and I did not sleep very much and she just wanted to snuggle. We continued to snuggle for a couple days. (: Tests continued and we also were able to complete the CT scan without anaesthesia. Through this we learned that the shunt was operating wonderfully! We are so thankful that we did not have to undergo another surgery.

Time went very slow as Whitney and I had a lot of 1 on 1 time together. I did not have too much energy to update people so our visitors were few and far between. Thankfully breastfeeding moms are given meals and the staff was wonderful with keeping me stocked with many forms of caffeine. I did not leave her side and we continued to snuggle.

Many antibiotics, observation, and tests later we were given the option to go home. They still were not sure which antibiotic they wanted to use for her but they were willing to work with our pediatrician. So, Tuesday early afternoon we headed out of the hospital. Two women from church were there to help me discharge and out to the van. I am so thankful that God is in charge of the many details.

We did not go directly home. First, we needed to stop and get Whitney's cast expanded as she was growing out of it. Secondly, we headed to the pediatrician to receive and 12 hour antibiotic shot to tide her over until we knew what they wanted to prescribe for her. THEN we headed home. This is when time began again. I opened the door and everything was just as I had left it.

We are now beginning our normal routine all in perfect timing as Fiona is coming back this evening. What a week.

Sensitive Skin

Yesterday as I gave Whitney her daily inspection and bath I noticed she had a rash under her cast on her back. The rash is on the left of her back and all over her scar from her first surgery to repair her spinal cord. When I called the doctor yesterday she wanted us in early this morning. We received some cream which seems to be helping a bit. She said that if it does not clear up soon then we would have to remove the cast to prevent further breakdown of her skin. Please pray with us that her skin will heal quickly and that God will protect it from future infection.

New Routine

How are we? I would say we are doing well. Whitney is tolerating her cast quite well. She was a little somber for a few days but she is now back to her good natured self. I am learning better and more efficient ways to care for Whitney each day. I can now change her diaper while she is in her crib in a dark room. We are also all getting used to waking up a few times a night to change her diaper and position so that she does not get pressure sores from the cast. Matt, Whitney, and Fiona now sleep through this new routine. (:

I was blessed to have an 'old' friend come and help us for a few days with this new adjustment and having Matt help this weekend was wonderful as well. We are just taking things day by day and figuring out how things work.

Whitney weighed in today at 21 lbs. with this heavy and awkward cast on. We also had a x ray taken and her hip is still in its correct location! We have our next appointment with this doctor in two weeks to see if there is need to split the cast. Babies grow so quickly that sometimes the cast becomes too tight and they need to split it a little. Then we will see this doctor during the first week of October to have the cast removed and try her brace again. Our hope is that the brace will be able to hold the the femur this time. If the brace does not work then she will suggest putting another cast on for another 6 weeks. We will cross this bridge when we come to it.

Thursday we see Whitney's other Orthopaedic doctor for a check up and see how her AFO's (ankle foot orthodics) have been working on her feet. We hope to get Whitney's brace ready for October on Thursday as well. The next thing on the horizon is an appointment with the ophthalmologist (eye doctor) at the end of the month.

Hip Spica Cast

We decided that it may be worth a try to put on a cast. Matt and I were able to pray & discuss this new information on Thursday night and we came to the conclusion that we did not have enough information to make an informed decision. Friday morning I contacted a few of Whitney's specialists in town to get more thoughts on the matter. They all responded very quickly and by mid afternoon it was quite apparent to us as to what decision we should make. The possible pros seemed to outweigh the cons. We are thankful we had to weekend to process this and come to accept the facts.

Our appointment was at 8:30 this morning at the doctor's office. Usually they bring children to the hospital to sedate them but they thought Whitney would be calm enough. She did a great job. We picked out a purple cast and got started. I did have to pull a few tricks out to keep her occupied. Thankfully I did not have to use my emergency trick which would have been to sing. There was the doctor, 2 nurses, and I assisting in the process. It probably would have been a great picture. I brought Whitney's AFO's along and the doctor was willing to stop the cast just above her knee so that she could still use them at night. They also used a gortex liner which looked like a shower curtain when they were putting it on. This will help tremendously if we have any blowout diapers. I need to frequently change her diaper to keep things as dry as possible. She has a smaller size diaper stuffed into the cast with a larger one over top of the cast to hold it all together. I was thankful to discover that she is able to wear an 18 month onesie over top. She is currently in 9 month clothes so, we made a big size jump today. The doctor took an x-ray before we left to check if the hip was in the correct location and it was. We will have another x-ray next week to check again. Please pray that it remains in place and the body will begin to accept it there. Meanwhile my mother-in-law was helping get a special car seat installed in our van while my father-in-law took care of Fiona at home. It all worked out very well and within 2 hours we were headed home with a tired little girl.

It seems that additional care for her will include, frequent diaper changes, changing body position every two hours to eliminate sores, bathing, and transporting her as she is now very awkward to hold and carry.

She is currently taking a nap with her sister and hopefully will begin to accept her new 'outfit'. Thank you for your prayers for us this weekend. We were a little stressed but I think this morning went better than expected and we feel peace about this decision.

Disappointing News

We had an appointment yesterday with Whitney's surgeon and after looking at the x-ray saw that the brace is not giving enough support to hold the femur in the correct location. She has suggested that we now place her in a body cast for a period of six weeks and then reevaluate for a possible additional six weeks.

This has been very disappointing news for us to hear as we were hoping that this brace and surgery would be effective. We are concerned with the breakdown of her skin under the cast, her loss of muscle tone, and her developmental progress. There is a less than fifty percent chance that this cast will work and it is hard to know what decisions to make for our dear Whitney. If the cast would work this would be very beneficial to her in the long run for walking and to hopefully avoid scoliosis (curvature of the spine).

Please pray for us as we make this decision as we strongly desire to make the right choice for the well being of Whitney and need God's wisdom. It is comforting to know that our God is a God of all knowledge and He will sustain us. We are open all and any encouragement today. (: Thank you once again for caring for us and Whitney, we covet your prayers.

Going Home

Whitney's doctor just released us to go home! Whitney will be ecstatic to lose the IV in her right hand and regain access to her comforting thumb.

As Susan mentioned, the surgery went well. It lasted about an hour, and when we got into the recover room, Whitney was crying and ready to be held. She had that unique cry that told us that she was scared and disoriented. The anesthesia is a real bear. The doctor showed us x-rays that demonstrated that Whitney's leg is in the hip after surgery. Now we pray that the pelvis responds and the hip socket develops.

Last night was a bit rough. Whitney was getting used to her brace and feeling a little discomfort from the surgery (the pain and swelling have been rather mild). At about 10:40, after we had settled her down twice, the IV pump started beeping for no apparent reason. It took the staff (who are exceedingly polite) about an hour to figure the problem, but which time Whitney was disgruntled and upset, and her dad was too. Fortunately, she snuggled back to sleep on my lap and slept relatively well for the rest of the night.

This morning, she seems to be her normal self, smiling and babbling away. The doctor was happy with how her incision (it's very small) looked and ordered our discharge. It will be nice to get Whitney back onto a normal schedule.

After the surgery, Whitney will be wearing a brace for a few weeks to a few months. Longer is actually better here--it means the hip is developing, so the brace is providing additional support. She'll wear it 24/7 for the next week until we follow up with the doctor. We should know next week whether the hip is responding.

We are so blessed that the surgery went well and our only problems were minor inconveniences. We praise God that we are being discharged on schedule and heading home, and we are praying that God will cause her hip to respond. It's amazing how many things have to go precisely right in the right order for a baby to develop into an adult, and yet we take it for granted.

quickly

A quick update for you. Thank you for your prayers today. The surgery and recovery went well. It has been a long day for us all. There has been much stress and little sleep. Thankfully we had a few visitors throughout the day to distract us. Matt is currently at the hospital with Whitney and I am home to get a few hours sleep and then we will switch. We will write more details later on.

Whitney's Hip Surgery

As Susan posted a few weeks ago, Whitney will, Lord willing, have surgery on her left hip next week Friday. I had no idea, but when babies are born, they do not really have a hip socket. The ball joint between the pelvis and the femur begins developing around six months. The ball on the head of the femur is cartilage. When the cartilage comes into contact with the growth plate on the pelvis, the cartilage begins to turn into bone (ossify), and the pelvis begins to develop around the head of the femur. Whitney's right hip is developing properly, but her left hip is not because the femur is not in contact with the pelvis (i.e. it is dislocated). The doctors hope that by cutting one of the tendons in Whitney's hip, it will relax her hip and permit the femur to come into contact with the pelvis. The doctors believe that there is about an even likelihood that the surgery will be successful.

The fact that Whitney's hip is dislocated would not be a major issue if her right hip was also dislocated. But the imbalance created by having one hip in the socket and the other dislocated hinders walking, standing and sitting. The possibility of significantly improved mobility for Whitney made this surgery worthwhile to us.

The surgery seems relatively simple compared to her shunt and back closure surgeries in January. Nonetheless, we'll be staying overnight at the hospital. Please pray that the surgery is successful--the doctors have said that they'll know within a week whether it has triggered the appropriate development of the femur and the pelvis!

After surgery, Whitney will wear a brace to stabilize her hip while the tendon heals (it will grow back together, hopefully without as much tension). We have the brace already. Apparently, it's a big deal that it's pink. Our surgeon's office had not seen one in pink before. We hope to post some pictures of Whitney wearing it (we have it already) later this week.

The latest

This morning Whitney had a 7 month check up at her pediatrician. I love this doctor because she is so encouraging and sincere. Whitney is now 18 lbs & 1 oz and almost 27 inches long. She is following the 70th percentile for both height and weight. She is ready to make the move out of her infant car seat and into the 'big girl' seat. We were told again today that she is developmentally ahead which is music to my ears. Shots were uneventful as previously however now I am getting used to her lack of response. Now I may need prayer for when I bring Fiona for her 3 year to prepare me for the screaming. (:

We also went to a summer program for the children at Conductive Learning Center. It was fun to imagine Whitney in a few years being part of that program. It was also great to see so many families and a healthy reminder that we are not alone in this journey.

I received a call today that the new hip brace has arrived. We will get it fitted on Monday morning and have a pre-surgery appointment on Tuesday morning to prepare for the big day.

Mommy & Whitney (and new picture with Fiona)

We have had a number of requests for photos, but our hard drive is full, so we cannot download our pictures from our camera. This picture is from last month at a friend's cottage. Susan doesn't know that I (Matt) am posting it.

Pride

What is spina bifida teaching me? That I have some pride issues to deal with. I have been enjoying this 'honeymoon' stage, the general public not knowing that Whitney has spina bifida. She appears to be a happy, cute, healthy, baby girl and no judgements are made. Having the surgery also means having a hip brace for an extended period of time. I have had to work through this and determine that in large part it has been my pride standing in the way. It is hard not to care what other people think. I hope that I can continue to learn and grow not only with this experience in my life but also with many others. I have a long way to go. Needless to say we have decided to give Whitney the 50/50 chance that this may work. If it works it would be a huge benefit to her long term. We are planning on a 7:30 a.m. surgery on August 15th. Her new hip brace is being fitted this Thursday and we should be ready to go. Please pray that our other fears would also be put aside as we prepare for surgery.

We have had a few other appointments recently and all is well. In therapy we are working hard on rolling over more and sitting up. Hopefully we can get a little further along on these two before surgery. Recovery and the addition of the brace may set her back a little.

Thanks for thinking of us.

Hip News

We had our second opinion to discuss Whitney's hip on Thursday and Matt was able to join us. The visit went well as we peppered the poor lady with questions. We also had another x-ray taken as she was unable to feel the hip correctly and that was helpful to see where it is currently. We are in a crucial time frame as her hips have not yet fully developed. Her right hip is on the right on course of development however her left hip is not. They hope for a 20 some degree for each hip socket. Her right is 17 which is good and her left is somewhere in the 40's. It is also very important that she is as balanced as possible as we look to the future. We are still having conversations about this surgery. The tentative surgery date is set for August 15th. We are leaning towards doing it but have not made the final decision as of yet. They would be severing a tendon in hopes the body would 'repair' itself and the growth plate would continue to grow with the hip in place. She would have a hip brace for the extended future as long as it seems to be working. If it does not work then there would be no reason for the brace. We would not need a cast and for this we are thankful. Please pray with us as we continue to make decisions on Whitney's behalf.

Clinic

We had a great experience at our clinic appointment. I did not know what to expect going into the day so we were the first to arrive. I just wanted to be prepared. We were put into our own exam room and everyone came to us. It was excellent. I brought a bottle of water and a small snack for myself and hardly had time to eat it. We ended up seeing about 10 different people and they just kept filtering in. People ranging from an orthotist to a social worker. There was someone obviously behind the scenes making things go so smoothly. We were also able to get Whitney's braces (AFO's) in the same visit which saved me a trip. The best part of the day was having a few odds and ends questions I have had waiting for someone to answer and I am happy to say they were answered. Overall a wonderful visit and I am so grateful to be living in a city that has so much to offer Whitney.

Over due update

I have been dragging my feet updating all of you. I apologize for that. My mind has been processing and processing some more. I may be thinking too much. We had an appointment at the beginning of the month at the Orthopedic surgeon office. We started with having x rays which we have not had since Whitney was born. Unfortunately they showed that her hip is out of socket on her left side and seems to spend the majority of the time out not in. Seeing the x ray film was a blow to me. This is very common for those with Spina Bifida because of their muscle structure or lack there of. I knew this but to see it on your little girl is another thing. Our doctor has recommended a surgery/procedure to lengthen a tendon in hopes that the hip will migrate back in. She would have a hip brace to help with this. The surgery/procedure has a 50-70 percent success rate. She also suggested that we get a second opinion which is now scheduled for the first week in July. If we decide this is best for Whitney it will happen in the next few months. This is a hard decision to make not knowing if it will help. When we look long term it is important that she is balanced to eliminate other issues that could come into play such as scoliosis. Much of what we do now is preventative.

The other addition we have is that she was fitted for her first Ankle foot orthotics (AFO's) This is another one of those things that is not uncommon. She can pull her feet up at the ankle and rests them straight up. These will force her feet in a downward position. She will only have to wear them during naps and during the night. For some reason this was hard for me to process as well. I love her so much that I strongly desire what is best for her. Accepting her differences is all part of this process and I have thoroughly enjoyed this honeymoon stage of just enjoying her being a baby without many props.

Tomorrow we have a clinic where all of the doctors come to one location and you basically have an all day appointment going from doctor to doctor. It seems like a very efficient way to do it so I am excited to go. I may not be excited at the end of the day tomorrow. (: The waiting room will be filled with West Michigan Spina Bifida children. I will let you know how it goes. We will hopefully receive our AFO's tomorrow as well.

Stats & Shots

Whitney is now 15 lbs and 8 oz which is in the 65th percentile. Her height is 25 3/4 inches which is in the 75th percentile. We are so grateful that her growth is right where it should be. She is ahead a few months cognitively and with her upper motor skills and her legs are obviously behind. So, we have much to be thankful for. The shots went as the first time. I was prepared this time around and it went fine. Thanks for checking up on us.

Neruosurgeon Appointment

We had a good report again yesterday at our appointment. Whitney's shunt seems to be operating as it should and he said that we can wait 2 months to see him again. I just love to hear that! When she turns one we will have a CT scan taken to be our base line scan for the future. I mentioned to him that she has been in a growth spurt as of late and has been a little more cranky than normal. He suggested that she may be teething as well and he is right. I was not even looking for that because Fiona's teeth came in so late. They are so different from each other. I think they have conspired together to keep us on our toes.

We see our pediatrician on Friday so I will keep you posted. She is going to receive shots again. We will see how that goes second time around.

Progress is seen

We began this 'new' therapy not knowing what to expect and thinking we would try it out. Well we are happy to report that we have already seen some improvment. Much of what we do is stretching and massage. We have also been showing her how to roll over and going through the crawl motion. The first sign of improvment was last week. When she lays on her tummy I bend her knee to stretch her quad muscle and her leg has been like a little wet noodle then one day she began to resist me. It seems that her brain is catching onto the motion and as soon as I feel a hint of muscle reflexion I drop her foot so she can sense cause and affect. I am not sure I explained that very well... The other exciting thing is that she rolled over yesterday. This is important in the fact that we want to keep her on track developmentally and we are so excited about any new 'trick' she has for us.

Fiona Turns Two

We now are proud parents of a 2 year-old. Her birthday was last week Friday on the 16th. We had a wonderful time celebrating with both sides of the family and even a cupcake with Fiona's neighbor friend. She is at such a fun stage of learning to communicate and testing the waters of independence. She continues to be our delightful girl and I think her biggest fan is Whitney. Whitney immediately lights up when Fiona talks to her. We are blessed.

Conductive Learning Center

We are pretty excited to be involved in this program. It is great to connect with another place that seems to know quite a bit about spina bifida. We have added many new stretches to our list. Whitney does not seem to mind them too much. We are doing them 2-3 times per day at home and going to the center once a week to start with. Their goal for Whitney is to stay on track developmentally. This means that instead of her sitting up whenever, which could be when she is 1, they get her to sit up around 6 months like normal. The short term goal is to increase her circulation and for her to kick her legs more. The long term goal is to potty train her and have her walking with a walker. It seems to me that her goals are realistic we just need to help her reach them. I am excited to watch Whitney continue to develop and grow. I know God has big plans for her life.

Catch-up

It is time to catch everyone up on Whitney. The urologist appointment went well over all. It was a little discouraging. What it boiled down to was that there are two extremes: catheter every 4 hours the rest of her life or constant bladder infections, of which neither is good. It took me awhile to not look at the extremes and to think of it in terms that Whitney will fall somewhere in between. We will discover this overtime and in the meantime we do not have to cath her which is great news. We did discover that she does have her first bladder infection which we have begun to treat.

We also had an appointment with the plastic surgeon. This went really well. Prayers have been answered and her skull is not fusing together prematurely. For this we are very thankful. Whitney's head shape is doing great as well. Her heard was beginning to get too long as a result of being on her side for the first months of life. We have had her sleeping on a special pillow to minimize this, which she did not appreciate. She was happy to hear that she is no longer in need of it. One less thing to worry about.

The latest news is that we had Whitney assessed by the Conductive Learning Center which just happens to be 5 minutes from our home. A friend had mentioned this to us before Whitney was born but our plates were full at the time. Conductive learning is an alternative physical therapy which was founded in Hungary in 1945. It is very common in Europe and is still getting a name for itself in the US. We are still learning all that is involved but we have decided to begin the program and see how it goes. This involves going there once a week for an hour and will increase over time. They mainly work with Cerebral Palsy and Spina Bifida children to help them become as independent as possible. Our first appointment is tomorrow. We are so thankful that this is available to us near our home. There are families that have moved here and others who fly in frequently for conductive learning. Here is the link http://www.aquinas.edu/clc/

Thank you for checking up on us and keeping us in your prayers.

Wonderful

Whitney is now 3 months old and we are doing wonderful which is why we have not posted. Just to let you know, it is a good sign when we do not post. (: All is well. We did have an appointment last week with the neurosurgeon and it was very encouraging. He reminded me of the signs of shunt failure which was a good reminder. Because things have been going well I have not been stressed about her shunt and honestly do not think of it much. So, he encouraged me to continue to be observant. A healthy reminder.

Today we went to the hospital to have a renal ultrasound done. This was an ultrasound of her bladder and kidneys. I tried to 'read' the ultrasound while it was being done but unfortunately I could not decipher what I was looking at. Wednesday we will go to the urologist and he will interpret them for us. My understanding is that they are checking to see if any urine is backing up into the kidneys and if so how much. I will tell you more later this week. She has not needed a catheter up to this point so our prayer is that we would not have to begin and that her bladder and kidneys would function properly.

4 years

Today marks our wedding anniversary. As we look back on the past 4 years it is amazing to see all that God has taught us through each other including this new growth experience. I think I can speak for us both in saying we are very thankful for eachother and knowing there are many challenges ahead in our marriage, dedicated to walk through them hand-n-hand. Marriage is a gift, isn't it?

Bittersweet

Whitney had her two month appointment at the pediatrician today. This means that she recieved shots. I was curious to see if or how she would react them. She did not react at all. I think she may have flinched a little with her right thigh but I could have imagined it. I wanted her to feel it so badly. When Fiona was 2 months old I remember crying because it was so sad to see her in pain and with Whitney I cried because she did not feel anything. I think that if God blesses us with another healthy child I will be happy and thankful when he or she cries.

Overall she received another positive report and for that we are very thankful. She now weighs a whooping 11 pounds and 12 ounces and is 23 inches long. This puts her in the 75th percentile in both length and weight. My many questions were answered and my mind was once again put at ease.

We have a little break again with the doctors and then we are hit hard in April. We will keep you all posted.

Two Months Old

We pause today in thankfulness. Thankfulness to our Heavenly Father for bringing Whitney so far in two months time. He has been so good to us protecting her from every angle:

1. Back surgery
2. Shunt Surgery
3. Weeks in the hospital
4. from infection in her back incision
5. from failure of her shunt
6. from many virus' this time of year
7. from her mom's flu
8. from her sister's attacks

I am sure there are many other ways that I am forgetting. God has been so faithful to us I wonder why I still worry. We are so thankful for our little gift, Whitney.

2 Doctor Appointments

I have been a little behind on updating you. My excuse is that I had the flu last week. Thanks for praying for Whitney's protection. We are so thankful that the virus did not spread to anyone else.

Last week we met with our plastic surgeon. Her back is looking great and there is no concern there. She also is now able to lay on her back. This is great news for Whitney's comfort. It also confirms for me that all is well with her incision. He wants to see her back next month to check her skull. He is concerned that her skull may fuse together too early. This would cause her brain to run out of room to grow. This is something that can happen when a newborn is shunted. The skull bones are somehow tricked into thinking that its job is done and fuses together.

This week we met with Whitney's neurosurgeon. He came to the same conclusion about her skull and also reassured me that this does not always happen but it is something to be aware of. This calmed my nerves about this a little. If it does fuse early we will have to have another surgery but we will pray that her skull fuses together at just the right time. Before our appointment Whitney had a ultrasound of her head and we viewed the results at the doctors office. I love technology! No more waiting 2 weeks for results. Just go down the street and have them explained as you look at them. We looked at the images from her last ultrasound right before her shunt was placed. The difference between the two was amazing. The first on had two huge black spaces where her ventricles were and in the other they we smaller than a pea. I am truly amazed.

We have next week off in the doctor appointment area. A much needed break.

February: Month of Firsts

Whitney has had a big month. She has begun to roll over, smile, and sleep through the night as of Sunday the 24th. I think that being the star of the show Sunday tired her out enough to begin a great new tradition: sleeping. The baptism went wonderfully. Fiona was a little restless sitting up in the front row but with a little sweat we made it through. While we were up front Fiona wanted to be baptised as well but thankfully we started singing a song and she forgot about it. The reception was a lovely time of fellowship together, celebrating Whitney, and a chance to thank many people who have been a great support to us these past several months.

Celebration

We could not wait 5 more weeks to have a party for Whitney. So, we are bending the rules and bringing her to church on Sunday night to be baptised and have a reception after. We wanted to celebrate her birth and the gift that she is to our family. Hopefully, she does not catch any viruses flying around the sanctuary.

All is well at our home. We are settling into a nice routine. Matt will be out of town for the majority of the week next week for work so my wonderful mother-in-law is coming to save the day once again. This coming Thursday we have an appointment with Whitney's plastic surgeon. He will check her back incision and hopefully tell us that we can start laying her on her back. (Whitney tells me that she is tired of being in her bouncy seat crooked.)

Good Report

The weeks are flying by and I can't believe Whitney is going to be 6 weeks old on Monday. We were blessed this week again by the presence of Matt's mom. She was only going to come for a few days and ended up staying the week due to weather. I love the snow!

We had an appoinment at the neurosurgeon this week. He was very encouraging and reminded me that every week and every month without an infection is a milestone. Her incisions look so good that I didn't think infection was a great risk any longer. He said that infection can fester for months and not show itself right away if bacteria got in her body during any of her surgeries. Needless to say please still pray that she is continues to be infection free. I asked many questions, as I am sure every mother does, and I was reassured on all of them. I still worry but I am not crazy about it...at least I don't think I am. We scheduled a head ultrasound for early March to check on how things are working with the shunt.

The physical therapist came for her weekly visit. As you many remember Whitney's lesion on her back was located at L-3 to L-4. This tells us aproximatly which nerves were damaged so we know what the outcome looks like is regaards to the future. She noticed that she has more movement on her left side and stated that she thought that her left side function was the equivalant of an L-5! This means that she has more nerve sensation on this side. I did not know that there was a possibility for the sides to be different but the nerve damage can be more severe to some nerves than others. We were greatly encouraged by this and look forward to seeing how else God surprises us.

We are now halfway through our incubation period at home. 6 more weeks! Please feel free to visit if you are healthy. I thrive on the adult interaction. (:

Whitney Update

Whitney visited the pediatrician earlier this week. Great report. She now weighs 9 pounds, 4 ounces--she was 8 pounds, 1 ounce at birth. We are pretty excited.

Wheelchair Backflips

A friend of mine just told me that ESPN was running a story today about a teenager with spina bifida who does backflips in his wheelchair. The story is encouraging--click on the headline above to see it.

Happy Birthday Matt

Matt's birthday was Saturday. We had a small celebration for him while his mom was still here. We have been home now for two weeks. It has been wonderful to have us all under one roof and not driving back and forth every day. Whitney has adjusted well and is a very good natured little girl. She wakes up twice a night and usually lets me go right back to sleep.

Fiona is also doing well. Her daddy was home with her for the first week home and grandma came this past week to spend time with her so daddy could go back to work. I am not sure I would have made it thruogh these last two weeks without them. I have been able to rest, nap and just take care of Whitney. It has been a wonderful gift. Fiona is missing her grandma's attention this week and it appears that she is more fun than I am.

As I mentioned Matt is back to work as of Monday the 28th. He was more than ready to return and told me a few times that he did not want my job. I found this quite amusing and thankful that I do not have competition for my position at home.

Since returning home we have had seven doctor appointments. This has been much more than I anticipated. It looks like we will have an average of one per week from here plus physical therapy. The good thing about having so many is that I get out of the house. The doctors have strongly advised us not to take Whitney in public for three months. The reports we have received from these appointments have been positive and a few of them even encouraging. She is healing very well. We have had her evaluated and she does not need any braces or casts right now. This is great news and makes us very grateful. We have a physical therapist coming to our home once a week. I am so thankful that this is one appointment that comes to us. Her tone and flexon in her legs is already improving as I do the therapy daily. This is also quite an encouragment.

We continue to take things day by day as things are still quite overwheming. Thank you all for your continued prayers and encouragement.

Shunt Pictures

A few more pictures--this time of the shunt. The first picture is of Whitney's head before they put in the shunt. The second is after the shunt surgery. The shunt is somewhat hard to see in the picture. In person, it is pretty easy to see because it is a small ridge on the side of her head. That said, we are thankful for her head full of hair because it camouflages the shunt pretty well. The doctors have told us that after Whitney develops a thicker layer of skin and more hair, people will generally be unable to see the shunt. They also warned us that some people will make insensitive remarks about the shunt. I think those comments, whether they are about Whitney's shunt or some other aspect of Whitney's spina bifida, are going to be those kind of remarks. We pray that we will have the self-control and inspiration to respond appropriately.

New Pictures

Whitney's Care

Many have asked me what special care Whitney needs now that she is home. She came home with needing dressing changes on her back for 24 hours, a diaper rash, and stitches behind her right ear, above her right temple, and a few in her abdomen.

The dressing changes are no longer necessary as her back is almost completely healed. It is amazing how fast her skin has healed and how great it looks. This Thursday we will have a check up with her plastic surgeon to make sure it is healing as it should.

We are trying to get on top of her diaper rash. She has very limited control of her bowels and so she always has a dirty diaper. We did find out that her kidneys look good over all. One kidney is a grade 0, perfect and the other is a grade 2 out of 4. They say this could get better or worse with time. This also meant that we were able to leave the hospital without a catheter. We have a appointment with a urologist in April.

The stitches for her shunt should disintegrate over time and we will see that doctor this Friday. The main concerns with the shunt are infection and failure. They have given us many signs to look for but some are as simple as crying. Please pray for protection for Whitney that the shunt with not need to be revised and that there will be no infection.

We also met with a physical theripist before we left the hospital. This was very encouraging for me because now I have some thing tangible I can do to try to help her. We have many stretches to work on with her for her hips, knees, ankles, and toes. All of these joints are very stiff and she can not straighten them. There are also appointments set up for this at the Spina Bifida Clinic and there will also be a theripist who will come to our home to work with Whitney. We are so blessed to live in an area with so many resources.

Home

We received a phone call yesterday around noon telling us the Whitney would be discharged. Once we got over our surprise we began to get excited. We had meetings all afternoon with what to expect with her overall care and specifically for her shunt. Thankfully, Thursday the physical therapist placed a piece of foam in her car seat with a hole cut out of it to relieve the pressure on her back. We packed up all of her things, put her in the car seat and headed home. We are also thankful we live close to the hospital as Whitney should not be on her back for more than 20 minutes at a time and only if necessary.

Last night was a bit rocky as Whitney was missing her noisy neighbors and favorite nurses but today was better. All four of us continue to adjust but I am sure it will get easier day by day.

Rough Day

I think today was the hardest one we've had since Whitney was born. Last night around 5:00, we found out that Whitney would have surgery to place a shunt this morning at 8:30. The nurses suggested that we should probably get there as much before 7:30 as possible. So we were up before 6:00 and at the NICU before 7:00.

Whitney's surgery went well, and she was back in the NICU from surgery by 10:30. Whitney woke up slowly. As she woke up, she was in significant pain. She started crying uncontrollably. We tried to console her, but nothing worked. It took the nurses at least fifteen minutes to start her morphine, and it felt like an eternity before it worked. The whole time, Whitney was crying and wimpering. The feeling of helplessness was heartbreaking. It was the worst experience we have had since finding out about Whitney's spina bifida.

They finally got Whitney's pain under control, and she snuggled with Susan all afternoon.

Shunts, Surgery & Such

The shunt placement surgery this morning was successful. Our pediatric neurosurgeon placed a roughly two inch long shunt in Whitney's head above and slightly in front of her right ear. Now we pray that the shunt functions properly and does not become infected. Please praise God for a successful placement and petition Him that the shunt both works and is long-lived.

For more than you ever really wanted to know about shunts, and how we got to this point, please keep reading.

What is a shunt?
A shunt is a straw like device that is placed beneath the scalp and inserted into the brain to relieve pressure in the brain. Whitney, like many kids with the myelomeningocele form of spina bifida has hydrocephalus (sometime referred to as "water on the brain," although this term is not accurate). Hydrocephalus develops as cerebro-spinal fluid is unable to properly circulate from the ventricles inside the brain up and down the spinal cord and around the outside of the brain. As a result, the cerebro-spinal fluid builds up in the ventricles, placing pressure on the brain. Shunts are designed to relieve the pressure.

To my understanding, the shunt has three parts: the portion that is inserted into the ventricles, a valve, and a catheter. The three pieces fit together like a flexible child's straw with loops (the ones my parents only let us use on very rare occasions). The piece that extends into the brain in infants is inserted between sections of the skull. The valve is attached to the former piece and is outside the skull. The catheter attaches to the other side of the valve and runs under the skin to the abdomen. The catheter empties into the abdomen through a small incision. The upper portion of the shunt is visible as a raised area on the head. The cathether is about the thickness of a spaghetti noodle and is not visible.

The valve in the shunt opens when the pressure in the ventricles increases to a certain point and bleeds off cerebro-spinal fluid into the catheter (and consequently into the abdomen) until the pressure is reduced to a point where the valve closes. The cerebro-spinal fluid is reabsorbed by the body from the abdomen.

Shunts have a limited lifespan. According to the Spina Bifida Association of America, "[a]bout 40% of shunts will malfunction and need to be changed (or revised) within 1 year of insertion, 60% will require a revision within 5 years, and 80-85% within 10 years. About 20% will require multiple revisions in their lifetime." Typically, only the top portions of the shunt need to be replaced.

Why Did Whitney Need A Shunt?
Approximately 80% of children with a myelomeningocele require a shunt. When we were at CHOP, the chief neurosurgeon told us that he was positive that Whitney would require a shunt based on the swelling of her ventricles at 24 weeks. Since that time, ultrasounds have shown that Whitney's ventricles continued to grow.

Our pediatric neurosurgeon in Grand Rapids is very conservative. Although we encouraged him to implant a shunt and close the lesion on Whitney's back at the same time, he wanted to wait to see if the hydrocephalus subsided after the closure before deciding to install a shunt. During the last week, Whitney's head size increase by two centimeters, suggesting that her ventricles were continuing to expand. The soft spots on Whitney's head were tense from the internal pressure, and her eyes rolled slightly downward (called "sunset eyes"). Finally, Whitney had CT scans last Wednesday (1/9) and on Monday (1/14). The CT scan definitively showed that the ventricles had grown.

We had been told to plan for a shunt surgery on Monday, then Wednesday (today), then Friday. Early yesterday evening, the pediatric neurosurgeon told us that he would perform the surgery this morning at 8:30. Again, we didn't have much time to prepare.

After the surgery, the surgeon reported that Whitney's cerebrospinal fluid was under significant pressure. This was reassuring because it demonstrated the necessity of the surgery. Whitney is currently recovering in the NICU.

Shunt Surgery

After a week of waiting, our pediatric neurosurgeon had seen enough evidence that Whitney's hydrocephalus was severe enough that it required a shunt. Whitney's surgery is scheduled for tomorrow morning at 8:30.

Loaded Question

Matt has asked me to post on how I am doing. The quick and easy answers are 'fine' and 'better'. I will try explain a little more for you. I will start at the beginning. The first few days I felt as though I had just had major abdominal surgery and my family was coming to visit me. It was hard to imagine that I had a baby because I only got a glimpse of her. The first time I was able to go see and hold her for a moment it was as if I did not recognize her. I am thankful that within a few days from those moments Whitney and I have had many opportunities to bond and there is no doubt in my mind which baby in the NICU is mine. It has been difficult to have the nurses tell me what Whitney likes or how she cries before a feeding. I am looking forward to taking her home and knowing these things for myself. It is just not natural. I find myself having unjust anger/jealousy towards her nurses for knowing her better than I do (I am working on this). I have to say that my calling as a mother has been solidified by these many hours of not being able to be a mother to my girls. I hope I am able to remember this in the future when I am ready to pull my hair out of frustration.

Currently, Whitney and I spend every afternoon together during Fiona's nap. If you have been wanting to visit us for a few minutes this would be a good time. I may be nursing so you may need to wait a little bit but they will let you know at the NICU front desk.

Noisy Neighbors

Whitney got moved across the nursery yesterday. There are five other babies in the nursery with Whitney--2 boys, 3 girls. Whitney had been on the boys' side and was enjoying it. They were good neighbors--generally quite, no excessive noises.

Yesterday, they needed Whitney's spot for a new baby, so they moved Whitney into a new bed across the room. Her new bed is not an incubator. Instead, it is a metal crib with "cute speckled paint" (not my words). Unfortunately, the upgrade in accommodations was accompanied by noisy neighbors. The two little girls next to Whitney set off noisy equipment that beeps loudly at random intervals. The beeps have been waking her up, and she's been letting everyone know that she's not happy about it.

Pictures

A lot of people have been commenting on Whitney's chubby face. You'll see that her face has thinned out since last Monday. We are starting to see that the shape of her face resembles Fiona's face--that's about the only similarity we've seen so far!

1.07.08


1.09.08


1.13.08

General Update

Since we last posted, not much and a lot has happened. Susan was discharged on Thursday. I'll let her post about how she's doing, but the first night home was rather rough. It's hard for us to remember that even though she's feeling better, she's not 100%.

Whitney doesn't know it yet, but she's been treated like a celebrity. Her distinguished visitors include her grandparents, all of her aunts and uncles (including the ones in Indiana), a great-aunt, her ministers, and such lesser distinguished persons as multiple perinatologists, her pediatric neurosurgeon, her pediatric plastic surgeon, her pediatrician, and umpteen wonderful nurses. Despite her father's protestations, several of the aforementioned distinguished guests as well as sundry well-wishers have labelled her "princess."

Whitney no longer has an IV (for the time being, at least). Whitney's veins are so small that each IV tended to last for only a day before it became blocked. After the IV in her head, she had three more IVs--another in her head and two in her arms. All told Whitney has had six IVs and about a dozen different holes in her head, hands, and arms. After the sixth IV failed, the nurses were unable to find a suitable vein and attempted to place a central line in what remains of her umbilical cord. Those of you who have had babies know that after six days, there is not much left of the umbilical cord. We were happy to learn last night that the attempt to place the line failed and the doctors decided that Whitney did not need an IV. I got to feed her this morning without an IV in the way for the first time.

Whitney is glad that someone finally paid attention to the fact that those needles hurt, and she does not appreciate them. Why her very loud protests while the nurses were placing all those IVs were ignored remains a mystery.

Whitney stopped receiving morphine and fluids through the IV on Wednesday or Thursday. We kept the IV in place so that Whitney could receive antibiotics to prevent an infection at her surgery site and to prepare her for the shunt surgery. Because the shunt surgery has been delayed (more on that later), the IV is not currently necessary.

Who knew that I could spend 3 paragraphs on IVs? In any event, we thank the Lord for these small things. The removal of the IV is a small step toward Whitney coming home.

Sorry for the delay in posting.

Coming Home

Big day today--Susan's coming home. I've been posting so much about Whitney that I haven't said much about how Susan's doing. Her incision is healing well--Lord willing, the staples will come out today. She's been in a maternity room two floors above the NICU, about as close to Whitney as we could get.

It has been harder on Susan than on me that we cannot simply hold and snuggle with Whitney. She did not sleep well the second night, so last night she received a little help and slept well though the night.

Until yesterday, we had so many visits from doctors, nurses, and family that we did not get a chance to talk. Yesterday, we had a chance to spend a few hours talking and sitting in Susan's room together. We thank God for the small blessing of a few hours alone.

I'm rushing around trying to get the house ready for Susan. Thank you to everyone for your prayers and kind words.

Whitney's Surgery (Now Illustrated)

Whitney's surgery to repair her myelomeningocele took about four hours today. As we mentioned yesterday, Whitney's lesion was a little larger than a half dollar. It was slightly wider than it was long. The area under the skin was somewhat larger yet. I took the picture to the right shortly after Whitney was born. You can see that there is a membrane over the lesion and that there is no cerebro-spinal fluid escaping from the site. That was good news. From birth until the surgery, the nurses in the NICU kept the lesion moist.

Our pediatric neurosurgeon operated to place the spinal cord back in the spine. That part of the operation took about two hours. The pediatric plastic surgeon took the better part of an additional two hours to close the skin and muscle over the wound. You can see what Whitney's repair looks like in the picture on the right. The doctors said that Whitney will not be able to lay on her back for about two weeks to allow the wound time to heal. Because of the heat from the incubator, the wound is covered with a piece of moist gauze to keep it cool.

Both surgeons gave us positive reports. The pediatric neurosurgeon reported that the injury to Whitney's spinal cord started around L3-L4 (lumbar vertebrae 3 & 4 or roughly near her waist), which is slightly lower than we expected. She retains a small measure of nerve function below that point. The pediatric plastic surgeon reported that the skin closure went well. If Whitney did not have enough skin around the lesion, the plastic surgeon would have had to make additional incisions to gather more skin from Whitney's sides or use skin grafts. Praise God that the plastic surgeon was able to pull her skin together without resorting to either process. In the picture above, you can see wrinkles in Whitney's skin (they look like they're covered with plastic). The doctor assured us that those wrinkles will disappear as the wound heals.

Whitney is back in the NICU. Shortly before the surgery, her IV malfunctioned and they had to remove it from her hand (again). They were unable to start it in her hand or arm, so they had to place it in her head after shaving a small amount of her hair. We were warned this might happen, but it still made us feel queasy. After the surgery, she remained on a ventilator until about 8:30. We were told to expect that Whitney would be on the ventilator for up to 48 hours. So we were very pleased that she was off it in less than 4.

Whitney continues to lie in the ventilator with small rolled towels under her waist to prop her up. Her feet are angled up against her legs, and her knees are locked into a shallow "V" position. Her hips, as we mentioned yesterday, are slightly drawn towards her. She seems comfortable now, but we will be taking her to physical therapy to hopefully loosen her legs. We were told to expect that she will need pediatric orthopedic surgery to improve her comfort and the stability of her hips. No idea when that will be yet, but we'll find out soon enough. Frankly, I'm going to try to get out of the scheduling business because the Lord has taken all of that firmly in hand over the last few days!

Whitney's Surgery

Whitney's surgery to repair her myelomeningocele took about four hours today. As we mentioned yesterday, Whitney's lesion was a little larger than a half dollar. It was slightly wider than it was long. The area under the skin was somewhat larger yet. Our pediatric neurosurgeon operated to place the spinal cord back in the spine. That part of the operation took about two hours. The pediatric plastic surgeon took the better part of an additional two hours to close the skin and muscle over the wound.

Both surgeons gave us positive reports. The pediatric neurosurgeon reported that the injury to Whitney's spinal cord started around L3-L4 (lumbar vertebrae 3 & 4 or roughly near her waist), which is slightly lower than we expected. She retains a small measure of nerve function below that point. The surgeon explained that Whitney will need to lay on her stomach or side for roughly two weeks until the wound heals.

The pediatric plastic surgeon reported that the skin closure went well. If Whitney did not have enough skin around the lesion, the plastic surgeon would have had to make additional incisions to gather more skin from Whitney's sides or use skin grafts. Praise God that the plastic surgeon was able to pull her skin together without resorting to either process.

Whitney is now back in the NICU recovering from surgery. We are going down to see her in a few minutes.

Surgery

We learned this morning that the pediatric neurosurgeon had found a way to work Whitney in for surgery today at 1:00. Please pray for a successful surgery.

Pictures

Visiting

We appreciate the support, prayers, cards, phone calls, and other expressions of support that we have received during the last few months. We have been asked by a few people regarding visiting us or Whitney in the hospital. Visiting Whitney is a bit tricky: The NICU rules require a parent to be present with any visitors at all times and prevent any children other than Fiona from visiting Whitney. Because Whitney is going into surgery soon and will need some time to recover, we have decided to limit visitors to Whitney to family and ministers for the time being.

Susan is recovering well, but needs to rest and recuperate from the C-Section. We ask that only family, our ministers, and our district elder visit at this time. We welcome visitors to Susan after Whitney's surgery on Wednesday afternoon.

We thank you all for your interest, prayers, and love through this time!

Whitney Has Arrived . . . Early

Whitney was delivered this morning at 7:52am by c-section one day early. Whitney is doing fine in the Neo-natal Intensive Care Unit (NICU). Praise the Lord for a complication-free delivery and a healthy baby girl!

Whitney weighed in at 8 pounds, 2 ounces and just about 20 inches long. By comparison, Fiona was 8 pounds and 20 inches long. Whitney has a full head of brown hair--don't know about the eye color yet. Pictures to follow this evening after I get home.

The Delivery
We woke up this morning at 5:00 to the realization that Susan's water had broken. By 6:00, we were on our way to the hospital. I didn't mention it to Susan, but the low fuel light was on the whole way.

We were expecting to deliver tomorrow, but God and Whitney had other plans. Because we assumed that there was no way that Whitney would come any earlier, we hadn't packed our bags or made plans for where Fiona would go. Fortunately, I was able to run around a pack a bag, and our brother and sister were able to come get Fiona.

The hospital staff got us into surgery with remarkable speed, and it seemed like just minutes later, we heard the cries of Whitney. She's got a pair of lungs. Contrary to our expectations, I had a chance to hold Whitney before she was wisked away to the NICU. Susan handled the surgery well and is sleeping comfortably.

The Spina Bifida
Although we have been praying that the Lord would completely heal Whitney, we praise Him for giving us a daughter with spina bifida. Whitney was born with a medium size lesion (myelomenengocele) on her lower back. The lesion is small than some that we have seen depicted in material on spina bifida that we have reviewed. Whitney is scheduled for surgery on Wednesday morning to repair the lesion. Please pray with us that the surgery would go well and that Whitney would heal quickly.

We have seen some positive signs--Whitney's feet respond to touch, her feet are not clubbed, and her head is not oversized because of the hydrocephalus. We haven't heard anything from the doctors yet about brain function or intracranial bleeding, but we are hopeful that Whitney's brain is well. I think we'll find out a lot more tomorrow and Wednesday.

Merry Christmas

We hope that you all had a wonderful Christmas celebration with friends and family. We certainly did. We have been very busy running from one weekend to the next but now that is drawing to a close. I look at my planner and 2008 is a blank slate. This is quite the contrast in leaving 2007 behind. I am not worried about not being busy however it will be interesting to see what God has up his sleeve for our lives in the coming months. It is so much easier when we make the plans and fill in each day and quite another when the space is stark white.

I have had 2 appointments since I have last updated you and not much has occurred. They were quick appointments with no ultrasounds. Everything seems to be fine and I have one more quick appointment on the 2nd and then a more detailed one on the 7th to be certain Whitney is ready to come and meet us on the 8th. My c-section is scheduled for the afternoon of the 8th. Please be in prayer for us as we will be unable to hold her and I am sure Matt will be torn as to be with me or Whitney. She will immediately go to the NICU and her surgery for her back closure is scheduled for Wednesday morning the 9th. They anticipate that she will be in the hospital for 2 weeks and we will keep you posted as to when or if her shunt surgery will be to relieve the pressure on her brain.

Have a blessed New Years!

Grace

Every once in a while, we get a card in the mail that makes us stop and reassess what's happened to us. We got one late last week.

Someone who knows someone who knows Susan sent us a card to encourage us. In it, she related that she had been praying for us ever since she learned about Whitney in October. She then related to us how God's grace is always sufficient for us by telling us how God had carried her through unspeakable grief: she had lost three children to a very rare metabolic disorder. During one of the pregnancies, her doctors ruled out autism, and she was disappointed. She knew that she could care for a child with autism, she could pour her love into providing for that child. But she couldn't pour a lifetime of love into the children she lost. She reminded us that, Lord willing, we would have that opportunity with Whitney. And with that, God reminded me (again) that Whitney with her spina bifida is a blessing that we have only by His grace.

Overwhelmed

We are now 5 weeks away and after yesterday I am feeling a bit more stressed about Whitney's upcoming arrival. My doctor appointment went well. She is no longer in the breach position which I suspected as she kept me wake the other night. This allowed us to get a great look at her spine which we have been unable to do through ultrasound. I have to admit that it was hard for me to see the reality of her spina bifida lesion. However, it does remind me how grateful I am that I am able to process this now before her arrival. She is now 4 lbs and 15 oz which places her in the 56th percentile. She has grown quite a bit in the last few weeks. Her hydrocephalus is now measuring 27 and 17. The ventricles are usually symmetrical so we are not sure what this means as of yet. The positive thing is that her head circumference is measuring normal. We were unable to see her feet so I pray that they are still not clubbed.

Matt met me for a tour of the NICU after my appointment and we were amazed at how large it was. There are currently 82 babies. We saw the first room and then the second and I thought, "wow they have 2 rooms". I think we saw around 16 different rooms with babies in them. Many of the babies are so tiny and have so many difficulties that it made me very grateful that Whitney will enter this world full term. I was encouraged to see 3 people I knew that I did not expect to see. It is always uplifting to see a familiar face. We did find out that Whitney's stay will be closer to 2 weeks not 1. We are a little disappointed as it will be very hard to leave her there for that long and more difficult as I am going to nurse her and will not be able to drive for a few weeks after surgery. The details will all iron out, right?

This week we also have a tour of the rehabilitation hospital in town and Fiona's toddler bed is scheduled to arrive. Next week we will begin our search of a school in the area that integrates special needs children. My next doctor appointment is on the 17th and it looks like it may be my last one before January 7th and 8th. The time is flying by.

January 8, 2008

We now know that Whitney's birthday will be on Tuesday, January 8, 2008. That Monday we will have a maturity amniocentesis to ensure that her lungs have fully developed and if so we will keep the date otherwise we will move it to a few days later. I am not sure how I feel about being awake while they perform the c-section...It just doesn't seem right.

Our next appointment, December 3, will give us more details about Whitney's care after birth. We will have another ultrasound, tour of the NICU, and have a consultation with the neonatalogist.

Currently we are trying to prepare for a few practical changes such as moving Fiona to a toddler bed and purchasing a few new items. The next 6 1/2 weeks are going to fly by with all of our Christmas festivities. She will be here before we know it.

Doctors Appointment

Yesterday I had my first appointment since being home from Philadelphia. I had 2 ultrasounds since after the first one the power went out and all of the information was lost so we started again. They reviewed the ultrasound and MRI reports from CHOP and hopefully they will be able to utilize the information.

Whitney has a head of hair already. I am very excited about this since all of the Vandersluis children are born bald. I can't wait to see what she looks like. She is currently 2 lbs and 13 oz which is in the 47th percentile for 29 weeks. We were unable to see her back again since she is still in the breach postion and looking very cozy down there. The fluid in her brain ventricles have increased a little to 17mm and 21mm. This is no suprise however we continue to pray that these numbers do not increase. The great news is that her feet are not yet clubbed. We are thankful for this and continue to await her birth watching God work in our little girls body.

My next 2 appointments will be every 2 weeks, Nov 19th and Dec 3rd. We are scheduling a c-section which is looking like it will be during the first full week of January. I can't believe that Whitney's arrival is only 9 weeks away.

Florida Keys

I know many of you are wondering how our trip was and it was wonderful. The flights were all as scheduled and Fiona did great. She slept on the way down and on the way home we sat next to a very nice man who held and played with Fiona for the last hour of our flight. Fiona was having the time of her life playing with the new 'toys' he had with him such as a golf ball and breath freshener. It is amazing what can entertain children. I buy these fancy new toys for the trip and she is more interested in playing with our plane ticket stub.

The weather was better than we expected. There was a 50% chance of rain each day with wind from NOEL coming in, however, it was sunny every day and rained at night. We were very blessed and Fiona and I spent many hours by the pool. We tried to go to the beach but it was pretty dirty and I thought that the beach volleyball court and pool were a better fit for us. We also went to the aquarium and a butterfly museum during the week. The butterflies were amazing and it was fun to watch Fiona point at all of them and attempt to grab a few.

Overall it was a wonderful gift. Thank you for praying for our safe return.

Spontanious Gift

Matt came home the other day with an opportunity to go to the Florida Keys for a week. Someone else from Matt's work was supposed to go and last minute was not able to. Fortunately, Matt's schedule is not packed since he cleared it for the possibility of being in PA for awhile. Matt asked if I could come and so Fiona and I are going along for the ride. I am still shocked over this opportunity because it is nothing we sought out. It just fell into our laps and here we go. This is a blessing and perfect timing before the holidays and Whitney's arrival. It is amazing to me all that God has and is providing for us. I am overwhelmed with the knowledge that He knows my every need.

In Retrospect

First, we apologize for not posting in the last week. Actually, I apologize, Susan has been encouraging me to post since we got back from Philadelphia.

In the past week and a half, I've been asked quite frequently how we're doing, and then specifically how Susan is doing. No one seems to believe me when I say that we're doing fine. It was disappointing not to be able to participate in the MOMS trial, but it does no good for us to dwell on that.

I never did explain what happened and how we reached the decision to enroll in the trial before we found out that we were not eligible. On Friday, we left CHOP impressed with the doctors and hopeful for the benefits that might accompany the surgery. The obstetrician we met with suggested that there was a possibility, based on CHOP's experience with the prenatal surgeries at CHOP before the study that Whitney could show a two level improvement. In other words, the effects of her spina bifida on her lower limbs would be like someone with a spinal lesion at the fifth lumbar vertebrae instead of the third (which is where Whitney's lesion is). Practically speaking that's the difference between walking until puberty with full leg braces and in a wheelchair thereafter to walking for her entire life with ankle braces. That said, we were very concerned about the possibility that if we had the surgery, Whitney could be born extremely premature. CHOP had carefully explained all the risks associated with prematurity, and they are exceedingly frightening. As an aside, I now have an immense sympathy for parents whose babies are born before the 30th week.

We spent much of the day Saturday intentionally not talking about the surgery because we both needed time to process the information we received. For those of you who don't know us well, Susan and I process information differently. I tend to be more logical and reach a decision faster (although I am more prone to change my mind) while Susan tends to ponder things over a longer peroid and then reach a firm decision. Susan and I agonized over whether we could handle opting into the study and then losing Whitney or causing her even more severe problems. More generally, we wrestled with whether it was God's will for us and Whitney to participate in the study.

To fathom God's will in a situation like this was not easy--we were considering an elective surgical procedure that could kill Whitney to improve her life. It's a little easier to accept the risk of a fatal surgical outcome, I think, when the surgery is life-saving or life-lenthening and the alternative is death. Susan and I prayed and sought the advice from friends who are ministers and doctors. They told us that ultimately, we were doing what the Lord requires of us, that we seek His guidance in prayer, search the Scriptures for normative principles, and use the intellect He has given us to gather all the possible relevant information. We concluded that we were considering the surgery for the right reason, improving Whitney's quality of life; that we were not taking unnecessary or unconsidered risks; and that we were not acting contrary to God's Word or our own consciences. Ultimately, there was no "right" answer--we could have the surgery or not have the surgery without our consciences condemning us.

The hardest issue to consider was "what if Whitney dies?" Spina bifida is not typically lethal during infancy (or childhood for that matter). Would Whitney's death be a sign of God's punishment on us for making the wrong decision? How could we live with ourselves/maintain a belief in a just God if Whitney died? We reasoned that God is a just God--He does not punish us for doing things that He has not warned us are wrong. Nothing in Scripture or our consciences suggested that the surgery was morally wrong. If Whitney died as a result of the surgery, it would not be God's punishment. God also promises us that He will not give us more than we can bear, a blessing we had been experiencing ever since learning of Whitney's diagnosis and earlier when Susan's mom passed away. We decided that we could be confident that no matter what happened, God would provide for us and use whatever happened for the good of our salvation.

So then, we were left with making a decision. Susan and I concluded that we were inclined to opt into the MOMS trial. We decided to sleep on the decision and if we still felt comfortable with it in the morning, we would opt in. We prayed on Sunday night that if the Lord did not want us to proceed with MOMS, that he would not give us peace with the decision. We woke up on Monday with continued concerns but without any uneasiness about the surgery.

Of course, little did we know that 12 hours later, we would find out that the Lord had already determined at least as of Thursday that we would not participate in the trial. We were admittedly a little upset that the Lord had allowed us to go through the angst of reaching a decision about the study. But looking back, Susan and I are still thankful that God clearly revealed His will for us. We don't understand why He allowed us to go to Philadephia and agonize over whether to participate in MOMS, but we are content that He is the sovereign God, we're not.

In the end, going to Philadelphia has been a blessing. The doctors at CHOP explained Whitney's condition in far more specific and helpful ways than anyone else we have met with. They were willing to give prognoses and make predictions that allow us to appropriately set our expectations. For example, the pediatric neurosurgeon at CHOP told us that it is virtually certain that Whitney will need a shunt shortly after birth because her ventricles are already significantly enlarged. We got to experience the hospitality of the Ronald McDonald House. And we got to wrestle with a very difficult decision and learned how to apply a biblical decision-making process.

I could go on, but suffice it to say that Susan and I are happy to be home, and we're at peace with the result of our trip to Philadelphia and with Whitney's spina bifida. Sorry for the stream-of-consciousness post. I'll try to be more succinct next time.

Home Sweet Home

We arrived home on Tuesday night. Our flights went well and our seats were upgraded on each one. The more leg room the better. Fiona (and Maria) picked us up from the airport and we were very excited to see her. Once we gave her a chance to be put down she took a few steps for us! What wonderful timing. We are so glad that we did not miss out on that moment. The unpacking is still in progress. Thankfully we were able to do our laundry before we left. It takes awhile to unpack 3 months worth of stuff, hopefully today is the last day.

Amazingly Matt and I feel peaceful about were we are. God has already provided so much for us and we have no doubt that He will continue to provide. Thankfully we have 3 months to prepare for Whitney's arrival. Her due date is January 21, however we will need to have a c section two weeks before that. Our next doctor's appointment is at the end of this month and by that time they should receive all of the results from the testing we had done in PA. CHOP is gracious enough to share my file with our doctors here in town. This should allow them to keep track of Whitney's bleed as well.

Prayer Answered

What was the prayer? We have been praying that God would make this decision unmistakably clear to us both as to what we are to do. He has answered us without question. Although we thought we had a decision to make and have been deliberating and stressing over this whole process in the end, there was no decision to be made. We came to a conclusion over the weekend to enter the study after many conversations, tears, and prayer. God brought us through this decision-making process bringing us closer to Him and to each other and we praise Him for that. Looking back on the day we have mixed emotions.

We are thankful that God took us on this journey to meet with these wonderful doctors and that they discovered this bleed through the use of the MRI, which we would not have had otherwise. We are also thankful that he has used this process to deepen our faith and has given us many opportunities to share with others. We are disappointed in the result because we have poured so much time and effort into the details of this trip. We have also put so much of our energy into this decision and then to have it disappear is actually hard to put into words... but how can we argue when God has answered our prayer so clearly?

I know that God is the healer not the Doctors here. When Whitney goes beyond what they have predicted her to do, there is only one explaination--God's healing hand not the in utero proceedure. Thank you for praying us through this difficult week. We continue to eargerly anticipate what God has in store for our dear daughter.

Going Home

A quick note:

CHOP told us today that we are disqualified from the study because of the small choriod plexus bleed in Whitney's brain. Praise God for a clear answer to our prayers. More to follow . . .

On hold, again

We had to get up at oh-dark-thirty this morning, as my brother-in-law would say, to get to CHOP to meet with the pediatric neurosurgeon this morning. We did not receive a lot of new information, except that it is a near certainty that Whitney will need a shunt if her lesion is repaired after birth.

On Friday, we learned that Whitney suffered a small amount of bleeding in her choriod plexis at some point earlier in the pregnancy. The choriod plexis is a gland present on both sides of the brain in the ventricles that produces cerebrospinal fluid. The bleeding does not extend into the brain itself nor did the blood spread into the ventricles (where the cerebrospinal fluid circulates to bathe the brain). On Friday, the obstetrician told us that he did not believe that this choriod plexis hemorrhage would exclude us from the study, but that the pediatric neurosurgeon (who was out) would need to make the call.

Turns out, the pediatric neurosurgeon cannot make the call after all. The National Institutes of Health (NIH) does. NIH funds and oversees MOMS. CHOP is concerned that the bleeding may exclude us from the study. The doctors are all of the opinion that the choriod plexis hemorrhage is not significant. But the protocols for MOMS exclude babies with any bleeding in the brain. The doctors rationalize that this was intended to exclude hemorrhages that occur in the brain itself and the ventricles, not the choriod plexis. The doctors have contacted the National Institutes of Health to recommend that we be permitted to participate in the study if we choose. Now we have to wait for them to respond.

Apparently, NIH has received the data and CHOP hopes to have an answer by the end of the day. Cynically, I'm well aware that this is Columbus Day, one of the umpteen holidays given to federal employees in lieu of decent pay. Hopefully, the right people are not taking the day off so that we'll really get an answer today. In any event, I highly doubt that we would have surgery tomorrow if we opt in. Another day without Fiona . . .

Friendly Presbyterians

We had a great Sunday worshipping with Immanuel OPC in Bellmawr, New Jersey. Strong, straightforward preaching at two services with communion (celebrated once a month--wish we did that at home) to boot.

After the morning service, we were invited to the church's potluck after the morning service. We even had to decline an invitation to join a family for dinner after the morning service because of the potluck. While we were getting ready to go to the evening service, a different family from the church called us to invite us to a bonfire after evening worship. After discussing our situation, the other families encouraged and prayed for us, then offered to help in any way that they can. It is an awesome experience to find brothers and sisters in Christ who immediately treated us as brothers and sisters even though they had never met us before. We look forward to worshipping with Immanuel in the future.

Fiona

We have been blessed throughout our marriage to know a wonderful photographer. When she found out that we were leaving last week for Philly, she squeezed us into her schedule for pictures of Fiona. She shared a few of them with us today, and they brightened our spirits tonight as we deliberate what to do. We share a few of them with you here, with her permission.

Here's Ronnie

La Famiglia

Today is Susan's birthday--she finally matured to join me in the post-twenties. After getting more difficult information about Whitney than I care to recount, I took Susan to a nice Italian restaurant. The food was excellent, and plentiful. But better than that, the atmosphere was sufficiently private to allow Susan and I our first opportunity to begin discussing where we going--at this point, our conclusion is "we're not sure."

We would ask you, our friends and relatives, "the family" to continue to pray that Susan and I will be able to readily discern the Lord's will for us by Monday so that we can return to CHOP with confidence.

In other news, our warmest thanks to Melody for sending a care package complete with a birthday banner, candles, and matches. It brightened our day after our last consultation.

By the way, we highly recommend the restaurant if you're ever in Philadelphia.

Day 2

What a day. It was filled with information, meetings, and emotions. I feel like I am still pulling myself together and it is 10:30 PM. Yesterday we had all of our tests and today we spoke with all of the surgeons about the results of those tests. We were able to meet with them one on one and pepper them with questions for hours. What a blessing it is to be able to meet with the most knowledgeable doctors for spina bifida in the nation. There was a lot of information that was confirmed for us and more details and specifics were given. This is such a difficult decision and I wish there was a 'fix' for everything but realistically there is not. The battle is long and up hill no matter which avenue we go down. It is comforting to know that God already knows where we are going today and in 5 years. Please continue to pray for us this weekend as we sit down together and weigh out all the information before us.

Tonight we were thankfully able to end the day on a good note. We went out to a restaurant and spoiled ourselves with the most delightful food. It was a wonderful dinner with great company. ;)

CHOP--Day 1

We're at CHOP now. Susan's talking to a genetic counselor. Our first stop of the day went long--Whitney started dancing when they put Susan in the MRI machine. I think she's got her mom's spirit. As soon as we are done with the social worker, we'll go on for an echocardiogram.

Our friends Steve and Carrie Wolters are coming to Philly to go to dinner with us tonight. We just saw them in August--check out the cute picture of Fiona from their blog.

Ronald McDonald House

We made it! We started the day in a rush to get Fiona to our Pastor's home and then headed to the airport. Our flights were uneventful and we arrived here on time. We decided to rent a car and after only 1 wrong turn we found the Ronald House. Thankfully it is right next door to the Police Department and it is also just a few miles from Rutgers University. Matt and I are still recovering from our shock after the tour of this house. You walk in and there is this huge community kitchen with probably 6 refrigerators lined up. 2 are for everyone and then there are the ones labeled by room that you can put your own food in. There are also 4 cupboards filled with food including Pop Tarts that I have been craving. (: There is a play room, living room and dining room on the main floor. Then we went up to our room that has 3 twin beds and 1 double. It is a very large room with a separate bathroom. We also have a lounge and laundry room on our floor with detergent provided! Everything is very clean and amazingly well kept as they are celebrating 24 years tomorrow. We are very blessed to be able to be here in such a wonderful and friendly home.

Our first appointment at CHOP tomorrow is at 8 AM. We will keep you all posted. Thank you for praying us through our travel today. Oh, and Fiona is doing great. (: She is settling right on in and to my understanding is quite entertained by the 2 Miller children. I am so thankful that she is being well taken care of and adjusting well.

Whitney's Stats

Whitney had another ultrasound yesterday. She is now 1 lbs and 9 oz which puts her at 55% for being 24 weeks old. In other words her growth is very normal! We found out it is very common for Spina bifida babies to have club feet but her feet are looking straight so far. We also know that she has no additional chromosomal issues so we are thankful for this overall good report. On the other hand her hydrocephalus is increasing. They first measured the fluid in her brain at 14 and now at 17. This was alarming to me but my Doctor was not surprised and said that an increase is exspected. (I am still concerned.)

I should get back to the packing... I love to pack.

Our new (temporary) address

Our liason at CHOP has been gracious enough to accept our mail for us until we return home or we move into a more permanant place after surgery:

Matt & Susan Nelson
c/o Jamie Koh
The Children's Hospital of Philadelphia
34th & Civic Center Blvd.
Philadelphia, PA 19104

Do we rent a car?

Now we get to sweat the important stuff like, should we dispense with the cabs and rent a car? They haven't figured out if we are going to stay at the Ronald McDonald's house in Camden or in the Sheraton Inn a few blocks from CHOP. Obviously, we won't need to drive to CHOP if we're at the Sheraton, and it will be easier to go site-seeing on Saturday. On the other hand, we will be more than 10 miles from the church we hope to worship with on Sunday.

With a little help from my uncle and his minister, we've found a church to worship with on Sunday. Immanuel Orthodox Presbyterian in Bellmawr, New Jersey. It looks like it's a little southeast of Philly on the better side of the Delaware River. I'm trying to find out if there is bus service from Camden and/or the University of Pennsylvannia to Bellmawr. If not, we either have to hail a cab or rent a car.

Anyone know how good/safe public transportation is in Philly? Is it safe to take public transportation from Camden? Is it safe to park in Camden?